Boyne Research Institute | PanCareLife

PanCareLife


PanCareLife was a 5-year (2013-8) EU Frame/work 7 Programme in the Health Theme that studied the impact of treatment regimes on the long-term health of childhood cancer survivors. Specifically, PanCareLIFE evaluated the risks of impairments in female fertility, in hearing (ototoxicity), and in quality of life. PanCareLIFE also developed guidelines for fertility preservation, and will disseminate widely the results from this project.

The main goal of PanCareLIFE was that survivors of cancer diagnosed before age 25 should enjoy the same quality of life and opportunities as their peers who have not had cancer.

The Boyne Research Institute was one of eighteen partner institutions from eight European countries involved in the project which ran from November 2013 and finished on 31st October 2018. Below is a list of the Institutions and their originating country in Europe.
 


The kick-off meeting was held in Mainz in November 2013 where the consortium met up to discuss the new project. Some members of the consortium, including Dr Byrne, were also involved in PCSF.

Dr Byrne was the Research Manager of the consortium, and as such was actively engaged in all aspects of the PanCareLIFE project. The consortium members belonged to one or more of the eight work packages, with each work package having a leader from one or more of the Institutions involved in the consortium (see table above). Below is a list of the eight work packages and their lead institution.
 

 

Dr. Byrne and research assistant Helen Campbell attended the biannual General Assembly meetings of PanCareLIFE. The Boyne Research Institute with partners from UMC Mainz, Germany and Institut Curie, Paris helped organise the closing conference of PanCareLIFE on 26th October 2018 in Paris. This conference was attended by survivors of childhood cancer and their families, support groups, medical professionals and researchers from across Europe. The results of the research and the challenging ethical considerations of the project were presented and discussed during lively roundtable discussions. In addition, survivors Jaap den Hartogh, Eline van der Meulen and Aimilia Tsirou, represented the viewpoint of survivors.




The Boyne Research Institute hosted the 7th meeting in the D hotel in Drogheda in Oct 2016 where we heard about the progress of data collection and ethical considerations of the project. For more information see the press release here.



PanCareLIFE members at the 7th General Assembly in Drogheda, Oct 2016.

OBJECTIVES OF PANCARELIFE:

  • 1. To establish cohorts of long-term survivors of childhood, adolescent and young adult cancer which consist of epidemiological, clinical and genetic data concerning fertility, ototoxicity and quality of life, and to provide harmonized datasets for WP 2-6.
  • 2. To set up and coordinate a Biostatistical Support Group to harmonize statistical analyses.
  • 3. To update the virtual pan-European structure for studies of long-term survival after cancer – update information on late-effects established in PanCareSurFup with new information about fertility, ototoxicity, and health-related quality of life.

The data from a total of about 12,000 former patients from most of the participating countries are currently being analysed. It is hoped to be able to use this data to identify genetic and non-genetic risk factors that may be associated with fertility problems and hearing loss. Researchers are also looking into Quality of Life issues which may arise as result of the harsh treatment regimes that the patients have to undergo. These issues could be anything from growth problems, and physical and intellectual disabilities, to difficulties with social integration.

The results of this project will help to evaluate the risks to the long-term health of childhood and adolescent cancer survivors, and to develop guidelines for care. Stratifying survivors into different risk groups so that long-term care can be delivered more efficiently will save survivors worry, and the health-care system time and money. The results from the PanCareLIFE project will be disseminated widely to the general public.

PanCareLIFE promotional material (brochures, banners and flyers) can be downloaded from here. PanCareLIFE newsletters (Sept 2017, Mar 2018 and Oct 2018) and a promotional video are available on the PanCareLIFE website www.pancarelife.eu.